3D CT - C1 abnormalities

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3D CT - C1 abnormalities

Postby JenandLuli » Fri Mar 30, 2012 4:04 pm

Hi All!
Just got the 3D scan of my daughters craniocervical junction. Very cool to look at! You can really see the bones, how they fit together, and how things rare malformed.
So, I'm looking at the C1 - the transverse process are different from each other (left has a cleft or split in the bone). The part of the vertebrae that the skull sits on looks to have extra bone protusion up on the left side. And you can see that it is slightly rotated. The left side covers a bit of the canal and the right side if farther over, so that it does not line up with the C2.

So, now my hunt is to look for a connection between C1 anomalies and syrinx. Obviously, the idea would be the CSF flow but I am hang a hard time finding literature directly related to something like this.

Please have a look and let me know your thoughts and observations - or helpful directions for me to search!

All notations are my own observations... not from the drs.
Image
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: 3D CT - C1 abnormalities

Postby lttutrow » Sat Mar 31, 2012 1:35 pm

WOW, that is an amazing picture! Have you tried emailing anyone like Dr. Frim, Menezes, or Ellenbogen to see if they can help point you at some research? Often they will help if they can! It may be that this is one of the areas without a lot of research to back it up, but something that some have clinical experience with?
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Re: 3D CT - C1 abnormalities

Postby JenandLuli » Sat Mar 31, 2012 2:47 pm

Thanks! We are seeing her new NS within Kaiser on Monday. Then we will see Dr Lazereff at UCLA on Tues (he and Bratzdorf do alot of research with cranio cervical abnormalities.
Then we see the NS at CHLA tues afternoon.
Once I get all their opinions I may reach out to those drs.
Thanks is for your input!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Posts: 100
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Re: 3D CT - C1 abnormalities

Postby cari » Wed Apr 04, 2012 12:13 pm

Any update? I am really curious to hear what each NS said.
Cari
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Re: 3D CT - C1 abnormalities

Postby JenandLuli » Thu Apr 05, 2012 11:43 am

I'm actually in a bit of shock!
I'm still trying to process what the drs have said.
The 1st dr (our ins. NS) Said he was onboard to do the decompression or whatever the NS at CHLA said to do. GREAT!
The NS at UCLA basically just wanted to teach us a Syrinx 101 class and dismissed the whole reason we went to him in the 1st place. I reached out because he was supposed to have written papers, etc about "Craniocervical Junction anomalies and syrinx". I asked him about it and he just said "not possible."
He then went on to say that her syrinx were incidental and not related to her symptoms AND we now need to search for another reason she is having all these issues. Even though all the symptoms went away after the last surgery and returned 6 months later - when the syrinx grew again.
okaaaaaaay.

We then went to the NS at CHLA who was the one that mentioned do a decompression just 6 weeks ago. I literally felt like I was in the twilight zone. He said almost the same stuff the dr at UCLA said... look for another cause to her symptoms. Ummmm... this is the dr that did the draining surgery on her lower syrnix and saw the change in her symptoms after. I again brought that up, but he dismissed it.

WHAT IS GOING ON HERE?????

Why are the drs dismissing her syrinx as incidental and saying her symptoms are not related?!?!?!?!!!! I feel like they all got together and went to some seminar that made then change there view on SM!

I'm sooooo confused and spinning. I was really hoping to get some help for my daughter.

Bak to square one. boo!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
Image
JenandLuli
 
Posts: 100
Joined: Thu Sep 06, 2007 10:58 pm

Re: 3D CT - C1 abnormalities

Postby cari » Thu Apr 05, 2012 1:03 pm

Jen,

How horribly frustrating. Did either NS suggest how to look for other causes? What do they propose for the next step? Dr. Fedor did his fellowship @ CHLA just last year, so he is probably familiar with the NS you are seeing there. Maybe you should go back to Fedor and explain the whole situation to him.?
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